We thought we’d give you an update on the latest developments on the next treatment protocol for Kim. In our last post we had mentioned the possibility [and likelihood] of entering a clinical trial through M. D. Anderson.
Things have progressed more quickly than we thought they would. Kim called the Research Assistant [Michiko is her name] and left voicemail over this past weekend. Michiko called her back Monday and, before we knew it, we had appointments with her and Dr. Yao ON TUESDAY JUNE 9, as in the day before yesterday!
So we hit the road to Houston again this week and had a couple of hours with her and then a lengthy visit with Dr. Yao about the plusses and minuses of the trial and exactly what the parameters were for getting in and getting out of it. Getting in was not a problem because of Kim's qualification for it, as I described in the last post. Getting out is easy too. Dr. Yao will monitor the results of all the scans as he already does. There will be more scans and tests and more eyes will look at it all. Everything, it appears, starting with the blood work, gets sent to Germany for perusal by doctors there, who evidently oversee the research worldwide. If, at any time Dr. Yao thinks there is growth that needs further [or different] treatment, he will pull her from the trial and pursue other treatment.
For you medical types and Wikipedia researchers, the drug being researched is called Lanreotide Autogel, and it has been an effective treatment for a condition known as acromegaly—a disorder of growth hormones resulting from an over-active pituitary gland. TMI? The hope is that this drug will also be effective in retarding the growth endocrine tumors like the carciniods in Kim’s liver. That’s the long and short of it.
We have a tentative M. D. Anderson schedule for the rest of the year. We return on August 24 for multiple scans and then will go pretty-much every 28 days, usually around the middle of the month. Some of those trips are just to get the shot [with a 50/50 chance of it being the drug or a placebo]. Every 90 days there will be CT scans and meetings with Dr. Yao. So there you have it.
We would appreciate your continued thoughts and prayers. I have a good number of you in my “spam” email to tell you there has been a new post. For those of you who want notification, you ARE on the list if you got email notification of this posting. If you got to this blog without an email from me and want one, just send your email address to jrlove@gmail.com and tell me you want on the spam notification of new blog posts. If you got an email about the blog and want off the list, just send me that request as well.
Thanks for coming along with us…
Thursday, June 11, 2009
Saturday, June 6, 2009
POST-MDA POST
We thought we’d make one more post before letting the blog go idle until next time, whenever that is. Thank you all for your sweet words and prayers in our behalf.
The “boat” [would that be the Love boat?] has stopped rocking as wildly as it was when we threw out the last blog [over the phone with Abby] in a rush to: [1] get Carrie to the airport in Houston, [2] get us back home to Ruston, and [3] get word to our watching and waiting friends and family. Thanks to Abby for typing through her self-proclaimed Eeyore fingers and getting the word out. Thanks to Carrie for taking three precious-few vacation days and coming to join the waiting at MDA. The presence of both girls through the Houston ordeal has been a great blessing.
In these last 48 hours or so back home we have had time to gather our wits and a bit more information in order to make a more informed decision about which way to head. We have heard [via voicemail] from Dr. Yao’s research assistant that Kim is “qualified” to be in the clinical trial that Abby mentioned in the previous post. The qualifications appear to be the combination of “where” her tumors are located and the fact that they are slow-growing and that she is not experiencing any of the carcinoid syndrome symptoms. It is a drug that has been used in other treatments, but never studied as an option for retarding growth of endocrine tumors. Since there is a limit of 200 participants worldwide, and no more than 20 from M. D. Anderson, we consider it a rare privilege to get to participate.
Kim is leaning strongly in that direction and probably will give Yao’s office the nod early next week. It will mean a trip to Houston every 28 days for a shot that may or may not be the drug—only 50% of the participants get the real thing. There will be several trips early on to get baseline tests, including another CT scan, an Octreoscan [full body radioactive scan] and lots of blood work. The clinical trial will last for 2 years and will include not only the monthly shots, but CT scans every 12 weeks. Dr. Yao said that if at any time there was any unexpected growth, he would pull her out of the trial and “un-blind” the process for Kim, in order to do whatever treatment he deemed necessary.
We have read the 20-page consent form and it is full of all the scary things that consent forms warn you of….things like HIGH blood pressure or LOW blood pressure, or all sorts of options in the lower intestine region that I won’t gag you with in this blog.
All in all, Kim is agreeing to be a lab rat, and she has a 50/50 chance of getting a drug that has shown some promise in retarding the growth of endocrine tumors. Either way it will help speed this drug to the market, if it proves to be effective. Kim wants all of you to keep praying and join her now in praying for success in this new treatment option for her and other “carriers” of this rare form of cancer. This will be our last post until MDA looms again.
We will notify you by email when more is posted, so you don’t have to keep checking. Let me [Dicky] know if you want to be on that email list [jrlove@gmail.com]
The “boat” [would that be the Love boat?] has stopped rocking as wildly as it was when we threw out the last blog [over the phone with Abby] in a rush to: [1] get Carrie to the airport in Houston, [2] get us back home to Ruston, and [3] get word to our watching and waiting friends and family. Thanks to Abby for typing through her self-proclaimed Eeyore fingers and getting the word out. Thanks to Carrie for taking three precious-few vacation days and coming to join the waiting at MDA. The presence of both girls through the Houston ordeal has been a great blessing.
In these last 48 hours or so back home we have had time to gather our wits and a bit more information in order to make a more informed decision about which way to head. We have heard [via voicemail] from Dr. Yao’s research assistant that Kim is “qualified” to be in the clinical trial that Abby mentioned in the previous post. The qualifications appear to be the combination of “where” her tumors are located and the fact that they are slow-growing and that she is not experiencing any of the carcinoid syndrome symptoms. It is a drug that has been used in other treatments, but never studied as an option for retarding growth of endocrine tumors. Since there is a limit of 200 participants worldwide, and no more than 20 from M. D. Anderson, we consider it a rare privilege to get to participate.
Kim is leaning strongly in that direction and probably will give Yao’s office the nod early next week. It will mean a trip to Houston every 28 days for a shot that may or may not be the drug—only 50% of the participants get the real thing. There will be several trips early on to get baseline tests, including another CT scan, an Octreoscan [full body radioactive scan] and lots of blood work. The clinical trial will last for 2 years and will include not only the monthly shots, but CT scans every 12 weeks. Dr. Yao said that if at any time there was any unexpected growth, he would pull her out of the trial and “un-blind” the process for Kim, in order to do whatever treatment he deemed necessary.
We have read the 20-page consent form and it is full of all the scary things that consent forms warn you of….things like HIGH blood pressure or LOW blood pressure, or all sorts of options in the lower intestine region that I won’t gag you with in this blog.
All in all, Kim is agreeing to be a lab rat, and she has a 50/50 chance of getting a drug that has shown some promise in retarding the growth of endocrine tumors. Either way it will help speed this drug to the market, if it proves to be effective. Kim wants all of you to keep praying and join her now in praying for success in this new treatment option for her and other “carriers” of this rare form of cancer. This will be our last post until MDA looms again.
We will notify you by email when more is posted, so you don’t have to keep checking. Let me [Dicky] know if you want to be on that email list [jrlove@gmail.com]
Thursday, June 4, 2009
June 4 Report
Hey friends,
I'm bummed to report a little bit of growth measured in today's visit with Yao. Three of the carcinoids on mom's liver have been busy; two grew about 4 mm and one grew 5mm. (The other five held steady.) We had just gotten so used to "no significant growth," that we were all a bit stunned and deflated when we got this news.
Reassuringly, Dr. Yao called it "very, very little" growth (that's two 'very's), but he did recommend taking some action instead of just waiting around, which has heretofore been our game plan. He told us about two potential drugs that mom can opt for:
(1) An FDA-approved hormone that is most often prescribed to carcinoid patients when they start to exhibit symptoms from carcinoid syndrome. Thankfully, mom is not yet having any symptoms, which means she doesn't have the syndrome. The idea is that this hormone retards the growth of the tumors, though the nice RN who was doing the explaining (Yao's research assistant) didn't have any hard data on it at the time.
(2) A drug that's in clinical trials. This would be a two-year program for which mom would get the meds -- or potentially a placebo, which is part of how the trial works -- and hopefully retard the growth of her tumors. The same nice nurse, Michi, said the drug has had success in doing just that. Mom would have a shot once a month, be closely monitored, and Yao could pull her out at any time if he wanted to go a different direction with her treatment.
Either way, Kimmie's back on a three-month schedule of visits to MDA because of today's measurements. To be very honest, we are a little sad, a little scared, and in need of wisdom on how/what/when to pursue treatment. Mom said to be sure to say we are "disappointed but regrouping" and "not despairing." She says she is looking at this as us (ok, her) finally getting a chance to do something about fighting this cancer, instead of just waiting for it to grow. "Getting out in front of it" was her exact phrase.
So now I guess we're entering a new phase of this whole cancer thing. I have to say, I'm not really jazzed up for it. Actually, now that I think about it, maybe they should have had Tigger (that would be Carrie) do this post instead of Eyeore (that would be me)...
At any rate, we covet your prayers/well-wishes/kind words, those we've already gotten and those sure to come. Mom also says thanks for the shower of love and support she feels from all of you.
I think I changed the settings on "Comments", so maybe those of you who have had trouble leaving notes (which are much, much appreciated) in the past, may be able to do so now? But dad says if anyone's having trouble/intimidated by the blog, you can email him or mom: jrlove@gmail.com and kimclove@gmail.com.
Thank you again to everyone for being friends to us and especially to mom,
Abby
Tuesday, June 2, 2009
How Kimbo spent her summer vacation...
Hey all!
Abby here. Sorry it's been so long since my last blog post -- eh, wait, no I'm not! It's been six glorious months since our last trip to M.D. Anderson, but here we find ourselves again for mom's latest check up. I will be reporting on all the exciting events because I am here, in sunny Houston, where the weather is hot, the oil derricks are flowin', and the world's largest Chinese man plays basketball.
Ok, actually, only most of that last sentence is true. I will be reporting, but from approximately 1,846 miles away -- where the weather is mild, the molasses is flowin' (how do you think we make the beans?), and the world's GREATEST baseball team is busy being great. Apparently all the other members of my family are lazy and blog-shy, so believe it or not I have been enlisted FROM BOSTON to keep you -- you who are probably closer to Houston than I am -- informed of the proceedings.
So far: Kim and Dicky left Ruston early this morning, swung through Bush airport and picked up Carrie, then slid into MDA in time for Kimbo's blood tests around 1:30. Kim fearlessly (ok, there was a little fear) sucked down her banana-flavored chemistry shake and underwent the big scan. She says there was actually less to drink this time around, for whatever reason. We don't ask questions; we're just grateful. She is now relieved because the hardest (physical) part is over. Now she gets to exercise her most fine-tuned and favorite virtue, the one she so graciously passed on to her two daughters...patience.
And now it's off to real food for the first time since about 10:30 this morning. For the people in Houston anyway. I just get a call as they're squealing into the restaurant: "Do the blog, would you? We've got to go order."
As always, thanks for your prayers, thoughts, kind words, and well wishes. Keep 'em coming.
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